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April Update

  It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.   Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We

Mercy Now


I’ve been listening to the radio show “Simply Folk” on Wisconsin Public Radio for over 35 years. It airs every Sunday evening for a couple of hours and features all kinds of folk music but with an emphasis on Wisconsin folk music. Last night we attended the 40th Anniversary Celebration Concert at Wisconsin Union Theater in Madison, featuring Chris Plata, Mary Gauthier, and Dom Flemons.

Getting disabled seating/tickets for Justin is often a difficult process.  Since this was to be an early Father’s Day present for me, Julia took care of these details.  It turned out that the power wheelchair seats were only available in the VIP general admission section.  Justin’s ticket was only $30 (same as regular general admission), but for us to sit next to him, our tickets were $75 (same as VIP tickets).  As a result, we ended up spending $180 instead of the $90 we were expecting.

At the time the tickets were purchased, we had no idea what we were getting for the $180.  The VIP tickets were still general admission tickets .  A few days before the concert, we received an email inviting us to the VIP pre-event meet and greet.  This was getting more interesting.  I should add here that I’m a huge Mary Gauthier fan.  I’ve listened to her music and stories ever since “Drag Queens and Limousines” came out in the late 90’s.

Her last record, “Rifles and Rosary Beads”, was nominated this year for Best Folk Record at the 2019 Grammys.  She didn’t win, but I would have voted for her.  The album was created when she met at retreats with veterans and their families.  Mary explained that she just took their stories and set them to music and rhyme.

I joked with Justin that the meet and greet was probably going to be with other VIP ticket holders and maybe some of the radio show hosts.


That statement started off true, but a few minutes later, Mary walked through the door.

She talked a bit with the radio show people and another vocalist accompanying her, but folks were not rushing up to Mary.


I could see Julia’s eyes plotting for something more.  About half an hour later, we were all gathered around Mary Gauthier for photos.






You might wonder why I included all three photos above, and that’s a good question.  Each of those photos captures an expression on Mary’s face that are all parts of her personality.  My favorite is the smirk in the last photo.  We saw that smirk often during the concert (from the fourth row).   She seemed to be having a good time, and I know the audience had a good time.

During one song, she got the whole audience to sing along, and it was very powerful.  At the end of the concert, all of the performers came out on stage and sang, “This Land is Your Land”, as the audience joined in.  It was the kind of thing that gave me the chills.
Before we left the meet and greet, Mary Gauthier took the time to walk over to Justin and thank him for coming to her concert–because that’s the kind of person she is.  I’ll close with a few lines from one of my favorite songs:  “Mercy Now” by Mary Gauthier:

“Yeah, we all could use a little mercy now
I know we don’t deserve it but we need it anyhow
We hang in the balance dangle ‘tween hell and hallowed ground
And every single one of us could use some mercy now.”




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